working while on dialysis

[jshabanian]

I am having a hard time with feeling guilty because I am not working now.  I have always worked in some way or another but since I went on dialysis I am not working. 

When I started PD I thought I would go back to work but I find that there is always an excuse or reason for not being able to work.  I am on the cycler now so early morning shifts won't work.  I find that my health is so up and down and I never know how I am going to feel   

Do most of you work while on dialysis?  What type of jobs have you found that work?

We are doing fine without me working but I just feel like I am being lazy and making excuses.

[Rerun]

It is hard when you have a good work ethic to sit home idle.  You want to feel productive and make money but at the same time you lack the confidence to do a good job and can't commit to being there everyday "on time".  At least that is how I feel.

I volunteer at 2 places.  Not much maybe 8 hours total per week.  But, it is my way of giving back for the check I get deposited in the bank from disability and social security.   

[Marina]

I  worked   all  6½  yrs  while  on  CAPD.      I  never  called  in  sick   due  to  dialysis  nor  PD.     

I  had  a very  physically demanding  job at  that  time ,  and  being    physically  active  actually  made  me  feel  better  (gave me  more  energy).

[willowtreewren]

Each person reacts to dialysis differently. Some maintain energy and the ability to work and others don't.

Do what you can to stay as healthy as possible.

 

Aleta

[jeannea]

I have not been able to work on PD. I'm exhausted all the time. I'll work after I get a transplant. Just do the best you can.

[sullidog]

I work at a bank so I sit, and I have FMLA for days I can't make it.

[Atooraya]

I have been one of the lucky ones. Able to put in 8-10 hours of work a day plus three trips to the gym per week. The only issue I have is anemia. It slows me down occassionally. Grrrrrrr. Hate taking more iron it constepates me. But I know I need to take more.

[highway61]

I continue to work while on PD. That is the reason that I choose home PD in the first place. It is kinda hard on some days. But while on home PD I can do it. It helps that my boss is very understanding and considerate.

[cath-hater]

I worked before I went on PD and continued working after PD and still working now, full time. I have this mentality that if I stop working and just lay in bed all day, I'll rot and die. Been working full time and doing PD for over 9 years now. Whew! Just typing it makes me tired.

[KarenInWA]

I worked FT when I was on in-center HD. Now that I am 6 weeks post-transplant, I am back at work PT (4 hour days) and will gradually work my way back up to 8 hour days. Right now, working 4 hour days wears me out! I like naps 

KarenInWA

[cattlekid]

I have been on D (in center first now at home) for a year now.  I still work full time.  I worked from the center with my laptop.  Luckily, I have a desk job that can be done almost entirely from anywhere I have an Internet connection.

[Katonsdad]

I have worked while on PD , HEMO , Transplanted and now back on Hemo,  U was off about 2 months while
getting under control again . Went back on 3 day aweek Hemo while working 12 hrs at night , I get off at 0800
and do hemo at 100. Home at 1400 in bed until 1800 and back at work at 2000 . 

I do thiis schedule 4 days on 4 days off , So there are days I do not go work,
I could not waut to get back to work , Thats what I do best . Job was held
for me as I have been their 31 yrs and can get 27 weeks sick pay .

Katonsdad

[mcclane]

in all my years on dialysis (pd, hemo) i've always worked.  When my peritoneal membrane was dead, I felt plain awful but I still showed up at work.

I purposely picked places that had good sick leaves/benefits, so that helps immensely.  Where I work currently, I am allowed up to 130 working days as sick leave, and depending on how long you've been there will dictate how much pay you get.  Right now, I get 55 working days at 100% pay and then 75 working days at 70%.  Once that is used up, I can go on long term disability.

[*kana*]

I worked for the first 2 years on D.  I stopped working when I got a hernia and couldnt do manuals and did the cycler at night.  I was working a job where I was on call during the night and it became very difficult.  I had to disconnect etc, go back to work, hook back up and be ready for my AM shift.  I was too tired and couldnt complete my treatment so I went on full disability.  I do have to say that those 2 years were VERY hard for me and I'd cry everyday walking out to my car at the end of my shift.  I worked at a 600+ bed hospital and pushed a 300# machine around and did a lot of walking.  I'd like to go back to work part time at something later in the day, but I am afraid I will lose my LTD and SSD.

Do what you can do and if you can't work full time then volunteer somewhere to keep your mind and body healthy.  They don't normally care what schedule you create for yourself and you are still contributing to society which makes you feel good.

[JLM]

I was on SSDI since 1077 due to back problems.  Now it's retirement.  I volunteer at the local hospital as a Auxiliary member. I "work" one afternoon at the gift shop and other special events during the year.  I am limited because my husband has ALZ and I am his only care giver.  I also am in charge of getting the bulletin put together at our church.

[jshabanian]

You are all so busy and industrious!  Truly an inspiration to all. Thank you for your answers. 

[tbarrett2533]

I worked FULL time with doing incenter Hemo (8 months)
was more sick than ever before but still did it, was unhappy too so when I went out with my PD cath placement surgery I stayed out of work for 7 months and loved EVERY minute of it and used that time to get my SSD too 

now I am back to work and my Job (which I have been at for 7 years) is super flexible and I make my own hours and schedule (that's why I went back there)

so I am working one day (5 hours) a week plus I get my SSD which is quite a high amount b/c I worked my tail off prior dialysis. 
so i don't really need to work, but its OK for now..... I am not going to lie........ I do not want to work and I used Dialysis as an excuse not to work, but I am tired all the time, CAPD takes up alot of my time and I just like to be home but if you can work and want to I say go to work!!! but if you don't, then dont do it!!! and for god sakes don't feel bad if you are not working enjoy your time off!!!!

[jshabanian]

tbarrett..you are the most positive and encouraging person I have ever talked to!  You challenge me to have a positive outlook and not feel guilty about my choices.  Whew!  what a relief. I think I just needed someone to say it out loud.  "

Don't feel guilty if you don't want to work and don't have to."

I am using my time to help my parents and my newly widowed mother in law.  I volunteer with "Fill a Stocking, Fill a Heart".  We gather supplies, make Christmas Stockings, and stuff them for people who probably don't get much for Christmas.  Elderly people in nursing homes, foster kids, homeless people, teenage mothers and others that the social service agencies recommend to us.

They get some necessities like soap, shampoo, deoderant, and some fun items like toys, crossword puzzle books, baby clothes, candles, etc.  I find this to be very rewarding and I get to meet lots of wonderful people in the process.

Thanks again, tbarrett, for your words of encouragement.

janet

[tbarrett2533]

tbarrett..you are the most positive and encouraging person I have ever talked to!  You challenge me to have a positive outlook and not feel guilty about my choices.  Whew!  what a relief. I think I just needed someone to say it out loud.  "

Don't feel guilty if you don't want to work and don't have to."

I am using my time to help my parents and my newly widowed mother in law.  I volunteer with "Fill a Stocking, Fill a Heart".  We gather supplies, make Christmas Stockings, and stuff them for people who probably don't get much for Christmas.  Elderly people in nursing homes, foster kids, homeless people, teenage mothers and others that the social service agencies recommend to us.

They get some necessities like soap, shampoo, deoderant, and some fun items like toys, crossword puzzle books, baby clothes, candles, etc.  I find this to be very rewarding and I get to meet lots of wonderful people in the process.

Thanks again, tbarrett, for your words of encouragement.

janet

you are so welcome!!!
anytime you need me, I am here!!!! 

[jadey]

I'm currently taking a full time course load in university with 2 part time jobs. I do 9 hours of CCPD every night. I think the big part is really whether you enjoy what you are doing. My ultimate goal is to graduate this spring and I will not let kidney disease put me back. My two part time jobs don't feel like work at all... in fact it feels more like a break from all the studying. Other than being stricken with kidney disease, I must say I am pretty lucky to have found things I love doing so much.

I think taking time off is a good thing. It's a good opportunity to relax, find new things to do. I liked the idea of volunteering someone pointed out. Volunteering is definitely one of my favourite hobbies. It's so flexible, you make a difference in someone's life and you get to choose what you want to do.

To be honest though... being on dialysis has definitely made things inconvenient for me. For example, I can't stay out late if I need to be on the cycler and up early the next day. Recently I've found a solution to that.. I would shorten my treatment time and then do some manuals the day before or after in order to make up the missed dialysis. The key is to make dialysis work around YOUR schedule. It has been a week since I started this new regime and so far I've had much more freedom than being hooked to a machine 9 hours straight.


So yes please don't feel bad for not working! Do what makes you feel best.

[theone]

I have been on dialysis for like 3 years and I continue to work full time.
I still have urine production which may be one of reasons why.

[tbarrett2533]

I have been on dialysis for like 3 years and I continue to work full time.
I still have urine production which may be one of reasons why.

I say if you wanna work and feel like it and feel well enough too then all the power to you!!! kidney failure just like any other diease or illness effets every other person differntly!!!
I was too sick..... sick more othen then not... had to literally pull myself to the car and force myslef through the day with terrible stomach and headachs throughout the entire day not even going to mention how tired I was (its a little better now that I do CAPD) this was when I was on Hemo however I still managed to work fulltime 40 plus hours while doing in-center Hemo for 8 months and I was sick as hell so where there is a will there is a way, but I dont want to work anymore and I dont and will not feel bad about it either!!!!
 

[komomai]

Aloha all, been doing PD for about 1 1/2 years now, working full time as a flight simulator manager for the Marine Corp.  Yes, it's been hard to drag myself to work, but I try and if I can't make it in, my bosses understand.  I do miss doing business trips from Okinawa, back to Florida but I know that long  trips really wear me out.  Right now I'm planning to work 6 more years if able, I'm trying to pay off my home.  Oh yeah, I also wouldn't be able to do any of this if I didn't have such a wonderful wife who takes really good care of me, she is my inspiration.

[mcclane]

ever since I was diagnosed with kidney disease, I've always worked.  My doctor knew that so he tried his best to keep me away from conventional hemo.  I started with PD, and where I used to work had a health centre, so I made arrangements with the nurse(s) there - they let me use an examining room so I could do my exchanges.  When I got laid off, my next job also had a health centre, so I did the same thing again and made arrangements with the nurse there and they let me use an examining room as well.

When PD finally didn't work out, my neph suggested nocturnal hemo, which allowed me to still keep on working FT.  I had to keep working, the medical benefits from the job helped me immensely.

[Grumpy-1]

I continue to work 12 hours days.  (9 hours work and 3 hours commuting)  Yes there are days that I don't feel like getting out of bed and I'm lucky that I have understanding bosses and co-workers.  My biggest issue is running out of leave - sick, vacation, or other types.   Between doctor appointments, and the days I'm home sick, it is hard to keep enough leave time on the books.

Grumpy